Client Portal      

Mirror Mirror on the Wall...

Mirror mirror on the wall, why can't I see my experience in you? Mirror mirror on the wall, why can you no longer show me who I am? Mirror mirror on the wall, you used to see me before I got my illness and now you just don't seem to understand. Mirror why do I feel so all alone?

According to Heinz Kohut and self psychological theory, a healthy sense of self evolves during childhood when three particular experiences take place. These experiences include, first having a role model to look up to and which one can idealize and desire to be like. The second is having a relationship with a parental figure who evokes a certain likeness between himself and the child. Lastly but certainly not least is the third, and it is what is called a "mirroring" experience. The mirroring experience is when the child presents some aspect of him or herself (e.g. thoughts, feelings, artwork, behaviors) and the parental figure acknowledges and validates the existence of what the child presents...much like a mirror. Although these exeperiences allow the child to start out with a very grandiose sense of him or herself, as normal disappointments in life occur a person learns to soothe him or herself, and learns that frustrations are a part of life, rather than destructive. This is how people build up resilience.

Mirroring for a child is not a very difficult thing to do. It can be easy to understand a child's desire to feel pride, happiness, and even guilt or shame at times, as these tend to be quite universal feelings. Many people grow into adults that have a pretty solid sense that if they communicate what they are experiencing to others, the others will empathize or at the very least understand. However, there are experiences that are not universally shared, such as traumas. Not everyone serves in the military encountering daily death/injury; not everyone is raped; not everyone is diagnosed with a chronic physical illness. What happens when these traumas occur? How does this impact the self?

When a person experiences something outside of daily normal life, particularly when it threatens life as it had been previously known to the person, experiential time can stop. For example, a person is diagnosed with a chronic physical illness that nobody else that he or she knows has. This illness requires massive life adjustments and learning to tolerate physical discomfort and pain. This person really just wants to be understood. S/he just wants to be able to look in the mirror in another person and to just feel a mutual understanding. However, in cases like this, the person may look into the mirror for a reflective understanding and may find that s/he has to start describing to the mirror what the experience of having the illness is like. Where is the mirror? If the mirror cannot reflect what I am going through then why bother talking? It feels so lonely.

Just as in childhood, the more people face daily frustrations and see that they are tolerable, the more resilient the child becomes. Disappointments are a piece of the nature of life and therefore are things that are also universally shared with others. One can fail a test and feel sad and the mirroring mother can say to the child with a real sense of reflective understanding, "oh I know you feel so sad that you did not do well." What happens when the frustration is one caused by constant physical pain, nausea, fevers, drastic weight change, inflamation, massive fatigue, fear of hospitalization, or fear of death? Sometimes the mirroring effect becomes something like a fun house mirror where you look into the glass and see a distorted image of yourself. A person with a chronic physical illness may try to start describing a feeling related to living with the particular illness and his or her mother may try to reflect something sympathetic back, but it misses the mark because this mother never experienced anything like the particular illness before. This can leave things going one of two ways for the person living with the illness. One, the person may shut down completely and continue to carry this experience all alone, feeling isolated, and person even harming his or her own sense of self (e.g. I am the only loser with such bad luck as to get this sick). Two, the person can strive to find people who share the experience of living with the chronic illness.

Imagine joining a support group where you get to meet and speak with other people who live with the same experience. This becomes like the child who brings his crayon drawing to his mother and says, "mama look what I made" and the mama says, "its so beautiful." As a person living with a chronic physical illness, you may say in the group, "my hair keeps falling out" and another person in the group says, "it is so terrifying." Mirror...mirror....

Now that you have found a new mirror, that does not mean you need to abandon any hope for support from your friends or family. Sometimes it just requires a little education and patience. Remember, they have never been through what you are going through so it is not easy for them either. It is hard to watch someone you love suffer and not know what to do. Let your loved ones know that they should not jump to any conclusions about how you feel and to try to read as much as they can about your illness and maybe attend parent/friend of people living with illness support groups to learn more about the illness. Also remind them, that as human beings, even though they may not have a chronic illness, they all experience moments when mortality is made present. They can think about when they felt really sick from a flu or virus, or if they have ever had a surgery or procedure. These things are not the same as your illness but it can open up little bits of empathy. Also all people have thought about fears of death before. There are ways to relate to what can feel like the unrelatable.

Children do not get to choose what kind of mirroring they get. Unfortunately some get the fun house mirrors and may grow up with very distorted images of their selves. As adults there is a choice. You can choose to find people who will understand you. You can look into the mirror and see yourself in someone else. You do not have to be alone.

Living with Lupus Seminar

I will be among a number of speakers this coming Saturday, March 17th, who will be speaking about living with lupus. My discussion will specifically be about many of the psychological experiences that people with lupus may encounter and the benefits of psychotherapy. The seminar will be held at Cap21 at 18 west18th street (between 5th and 6th Avenue)in room 605 NYC between 11:30am-3:30am. Anyone interested in attending can register by emailing seminars@sistazreachingout.org. Come out and show your support!

How Can I Share How I Feel When I CAN'T FIND THE WORDS!

Imagine living with a chronic illness that provides you with a daily experience of your body and of your life that people around you do not understand. It can become very frustrating and very lonely as one persistently tries to explain to others what it is like to live with his or her given illness. At times it is easier to give up because of the exhaustion following continuous repetition and disappointment with others. Imagine how much more isolating it would be to live with chronic illness and to not be physically able to find the words to even try to share your experience with others. This can be isolating, frightening, and definitely challenging.

Many people who live with chronic physical illnesses experience a variety of cognitive difficulties, ranging from mild but frustrating to serious and impairing. Sometimes these cognitive changes include problems with language. For example, illnesses such as Alzheimer's Disease, other forms of Dementia, certain Traumatic Brain Injuries, and Parkinson's Disease can often be accompanied by various forms of Aphasia. Aphasia is a broad term referring to difficulty producing speech, and can include the leaving out of important words in sentences, the inability to speak fluidly, or sometimes creating sentences that are nonsensical, among other things. Sometimes Anomia is also present, meaning that a person cannot name an item that he or she sees. Other illnesses, including Multiple Sclerosis and Lupus can lead to a less severe form of Aphasia called Dysphasia. Dysphasia refers to when a person has a hard time retrieving words when speaking and gets "stuck" trying to recall a word that is otherwise frequently used. People suffering from Dysphasia also commonly begin to make frequent spelling errors, which they did not do so before the onset of their illness. Regardless of the obvious functional difficulties that these cognitive impairments create in one's life, they also can follow with a psychological experience of isolation.

People living with certain chronic illnesses may have a difficult time producing the sentence "please hand me a glass of water; " however, there are many ways to work around this. One can point to the glass, can show a picture of a glass of water, can get the glass of water him or her self, or can write part or most of the sentence on paper. What happens when one wants to share feelings about how being diagnosed with an illness has followed with a mourning of a life once lived? Or what happens when a person wants to explain to their friends how fatigue is so bad that he or she can not stay up late anymore despite a desire to, and even though it causes sadness. A person can try to share these experiences but they are much more complex than trying to communicate "pass me the glass of water." This can leave a person feeling very alone.

Aphasias or Dysphasia can sometimes rob one of the "being with the other" moment--the moment where one can really be with a loved one, share emotions that come from a deep place within, and let the loved one witness the affective reaction that comes with sharing. It is a beautiful thing to cry with someone, to yell out your frustrations, or to just hear you. So what can people with such a cognitive predicament do? Yes there are cognitive exercises and speech pathologists that can sometimes help; however, not always. Regardless, one CAN share how he or she feels even when he or she cannot find the words. Try to speak what you want to say. People who love you will be patient and sometimes may try to fill in the words for you, to which you can then tell them if it is the right word or not. You will be surprised how sometimes loved ones can be so attuned to you that they will be able to identify words that you want to say. If the situation is more serious and it is too difficult to try to speak your experience, consider another communication medium such as drawing or painting. The image may not be the exact words that you want to share with the other person but the key is that you will not be alone with your experience--you will not be isolated from the people around you. Most importantly, never underestimated the power of non-verbal communication. Sometimes a glance, a posture, or a gesture says a thousand words. You can show a loved one your feelings though non-verbal means and then you can let them be there for you.

So perhaps you wont be articulating yourself perfectly using precisely the most appropriately chosen words anymore. Yes it is a loss...a sad loss. However, do not forget the most important thing, which is making sure to not isolate yourself. Anger and sadness about loss can leave people wanting to shut themselves up alone in a hole, especially when it is hard to verbally communicate. People need people to be with each other and to acknowledge each others' existence and feeling states. I am not saying that it wont be frustrating at times, but you CAN share how you feel without words...just be. Be with others and there will be a way. You will not be alone in your experience ... you do not have to.

It Is Ok that its Not Ok!

People with chronic physical illness frequently hear questions such as, "how are you feeling," " but it is not serious right," "you don't have to change your lifestyle, do you?" Oftentimes before the person with the chronic illness gets a chance to even respond, the questioning person thwarts expansion of the dialogue by saying something like, "I know you'll be ok" or "you're ok, you were always and ok and you will be." Such statements while on the surface appear to be supportive and encouraging can be quite dissonant from what the person with the chronic illness is likely to be experiencing. Depending on the particular illness, the stage of the illness, and various individual factors, the person with the chronic illness may not feel that everything is going to be ok and in fact in some instances things may not be "ok."

Although loved ones may believe that they are being helpful or "keeping a chronically ill person's spirits up" by denying the reality of the seriousness of a chronic condition, they may in fact be hurting the person who lives with the illness. The person who lives with the chronic illness may know very well if they have a poor prognosis, or even if their prognosis is good, they may mourn the changes that have had to be made in life in order to cope with the illness. Even in the best case scenario, it is not ok that a person's body fails in some way and it is not ok that adjustments have to be made. Acknowledging reality does not mean that one cannot be humble and grateful for what he or she still has, or that one cannot be optimistic about the future. Accepting reality and keeping a positive attitude can coexist.

There are times when people who live with a chronic physical illness may want to become nostalgic and talk about what their bodies used to be able to do. Mourning is part of a process of accepting one's illness and current state, and sometimes part of mourning is sharing old memories with others, similar to when a person loses a loved one and then finds himself sharing stories about that person. The person with a chronic illness, who can be any age, may just want to talk about how her or his life used to be before the illness forced certain changes, and may just need someone to listen and let them cry. Loved ones need to know that this is NOT a destructive thing for the person with the illness. It will not cause depression or destruction--it is part of healing. Loved ones need to be able to separate their own anxiety from the person with the chronic illness' anxiety. It is important to remember that people who live with chronic illness, especially younger people with illness, are forced to face issues of mortality and fragility much earlier than most other people do. Oftentimes, the folks with the illness become much more comfortable addressing such issues than their non-chronically ill counterparts. So when loved ones shut down any conversation about how being chronically ill is not ok, the underlying motive is really to prevent themselves from feeling anxious over issues of mortality. It seems like its about the person with the illness but really...its not.

If you really want it to be about the people who live with the chronic illness, then lend them your ear. Let them talk about how its not ok to be going through what they are going through. Let them know that its ok that things are not necessarily ok and they do not have to be something that they are not. Let them cry. Be unselfish and tolerate your own anxiety so that your loved ones will feel free to express themselves to you. This is really what will keep one's spirits up, what will really be helpful, and what will not feel dissonant from the person who lives with chronic illness' experience. Unfortunately sometimes there are people who live with chronic illness who have loved ones who are not capable of putting their own anxieties about mortality aside and who cannot provide this open space for their loves ones. In these cases it is imperative for the person with the chronic illness to seek support elsewhere, either through a support group, in psychotherapy, or from any other person who will let you know that IT IS OK THAT ITS NOT OK!

Introjects or Independence

When living with a chronic physical illness one must engage in a tricky balancing act between making sure to give oneself the care that one deserves versus maintaining an active and fulfilling life. At times, folks who have chronic physical illness need to opt out of certain events or delay addressing certain responsibilities in order to maintain a level of health. Other times, these same people may push themselves to get through the day and to see all the people that they need to see. Neither option is more correct, as everything depends on that specific instance and on the context of the situation. The root of the decision-making is also extremely significant. Does the decision come from a place of independent action and desire, or does it come from a deeply seeded fear of letting others down?

According to psychoanalytic theory, all human beings possess what are called introjects. Roughly speaking, introjects are the internalized ways of being and experiences of ourselves that follow from what one's parents persistently and consistently expected/expects from him or her. Some people may have internalized the idea that they are never good enough unless they maintain an impossible ideal of perfection. It is likely that these people have a narcissistic parent who needs to remain as "the best" and therefore creates situations where everyone else can never be good enough, especially his or her children who are viewed as competition. A message gets passed down to the child that no matter how successful he or she is there will always be something wrong or not good enough with the child, which keeps the parent in a dominant position. This critical introject will remain as a part of the person not only through childhood but throughout one's life, and can continue to influence a person's decisions and actions unless analyzed or understood further.

People with such introjects tend to overachieve with an underlying hope that their parent will eventually approve, even after that parent is no longer around. The internalized idea that anything less than perfect will follow with criticism and disappointment drives some people to behave in ways that might actually be harmful to themselves. For example, an individual may not be feeling well, may have a fever, and feel exhausted; however, she or he will still go to their job and work 7 out of the 8 hours in the workday and then will come home and feel guilt and anger for not working the full 8 hours. Others viewing this from the outside are more likely to see how irrational this person's behavior and feelings are, while the person him or herself can only experience him or herself as a failure, despite feeling physically very ill.

It is important for people who live with chronic physical illness to be able to identify the impetus behind their actions. Even when not in an acute moment of illness, some chronic illnesses require preemptive rest in order to avoid future symptomatic periods. Therefore, when one who lives with a chronic physical illness is thinking about pushing him or herself, it is helpful to take a minute and just think about why. Why do I want to give it my all today? Is it because this activity is really meaningful to me? Is it because if I do not I will just be less than perfect, a failure, like my mother always expected me to be? Is pushing myself today and possibly feeling ill tomorrow worth this? Is this my introject or my independence?

Although not every one who has a chronic physical illness has had a narcissistic parent or such a critical introject, it is always important for everyone with a chronic physical illness to put some thought into their actions. Frivolously acting without thought can be dangerous to one's health. Living with a chronic physical illness can really force some into analyzing why they feel the way they do, why they act in the manner they act, and may shed light onto the roles that certain key family members played in their development. Understanding oneself in this deep and meaningful way is the beginning of true independence.

Beneath the Anger

Do people ever ask you why you seem to be so grumpy lately? Do you ever find yourself snapping at others easily or just feeling yourself tense up for no apparent reason? Do you question yourself about why you seem to be so angry?

Anger can sometimes be a significant part of living with a chronic physical illness. There are many things that one can feel angry about. The anger is not limited to just the initial shock of the diagnosis or to the adjustments that it forces one to make. Anger can persist throughout various moments in the life of a person who has a chronic illness, and for many different reasons. Do you ever wonder what that seemingly random uprising of anger is about? Think about what is beneath your anger.

Lying underneath your anger may be feelings of sadness and pain. Not everyone is comfortable with allowing hurt, pain, depression, or sadness to be consciously recognized and felt. Sometimes it is easier to just be angry rather than sad. Other times one may be experiencing a sense of not being understood by others, which can follow with feelings of loneliness and isolation. If a person is not aware of these feelings or does not have the words to describe them, an uncanny and unidentified frustration or anger may emerge. There are moments when people are reminded of a life prior to their illness as well. These moments can also serve as catalysts for feeling angry. The underlying reasons are infinite, and although there are certainly shared experiences among different people, it is helpful to figure out your specific reason in a given moment.

Sure one can just be angry because something unfair happened or someone did something that was anger-provoking. However, many times when living with a chronic physical illness you may be left wondering "why am I so angry right now?" Rather than let the anger wear you down or push people away, really think about what is beneath the anger. Maybe keep a journal and track events that have occurred and how you felt at each moment, or try to make sense of it by speaking with a psychotherapist, or maybe meditate. There are multiple paths to coming to an understanding. Find what works for you. Some might think, "what's the big deal about just being angry?" There is no big deal; however, if you find yourself angry more often than not you do not have to live that way. If it is possible to feel content more often than angry, why not? Don't you deserve that? If your answer is no then I would encourage you to think about what is beneath that as well.

Seminar Saturday Jan 21st. Living with Lupus!!!

Saturday I will be one of a few presenters giving a talk in NYC on Living with Lupus. My talk will specifically be on psychological experiences that come up when living with lupus and the role of psychotherapy. There will be a series of presenters discussing various issues related to lupus.If you are interested in attending let me know and I'll give you details on how to register! Hope to see you there!

Limitations...

People who live with chronic physical illness are no strangers to the word "limitations." Although all human beings, including those who do not live with chronic physical illness have limitations, the limitations are usually not acknowledged or experienced as a reality until one has reason to do so. Just like with the reality of death, most people do not want to think about the reality of human limitations, but this is something that people who live with chronic physical illness cannot avoid. In fact, many people with chronic physical illness may be completely tired of hearing about their limitations. It seems as if just when it seems that the concept of limitations has been discussed to no end, a new angle on the topic of limitations arises.

Living with a chronic physical illness can be a constant process of adjustment. One may think that he or she has come to accept the life changes that come with living with a particular illness, shoving the reality of limitations into the background, until suddenly a new adjustment is necessary, exposing the reality of one's limitations all over again. For example, imagine being diagnosed with a chronic illness which requires one to alter his or her work schedule. One may feel the need to resist these necessary changes until he or she realizes the need for an adjustment and accepts the alterations necessary. At this point this person may feel good about his or her life situation and may experience his or her limitations as something that has been dealt with and now put aside. But what happens when after a year or two that same person's symptoms change or worsen? This person's current system of dealing with his or her limitations may no longer function as needed, making the person's limitations something that again needs to be addressed.

It is not easy for anyone, chronic illness or not, to accept that humans are not capable of doing everything. People who live with chronic physical illness inevitably have to learn to accept this reality through a fluid process. Learning to live with human limitations is not something that happens after a one time adjustment or event. Rather it requires an ability to be able to accept a constant evolution in how one's limitations impacts his or her life and in how one will cope with these changes. This is not an easy thing to do and can follow with an enormous amount of frustration, anger, sadness, and even depression. It takes incredible strength to just acknowledge and accept that another adjustment in necessary, and to then get to working on it. One does not have to go through this process of coping with limitations alone.

See the limitation, accept, adjust...but you do not need to do it by yourself! Express your needs to others (e.g. your employer, partner, family, or friends). Ask for help with the adjustment. Speak up...you are not annoying, a burden, or a nag. Your needs matter. Talk to a professional. You do not have to get through this transitions alone.

What Perspective are you Viewing it From?

Happy 2012!!! Welcome to a new cycle, a new year, and a new opportunity to let go of the past and prepare for change. Whether 2011 was great, good, ok, not so great, or simply very difficult and tough, there is something common in everyone's 2011--it has passed. Everything passes and there is always something to look forward to, even if what is coming may be more challenging than what has come to pass. For people living with chronic physical illness, 2011 may have been a time of adjustment, of pain, of suffering, or of remission. What will 2012 bring? There is no way to really know. The only thing that can be controlled in the immediate present is how one copes in the moment--what perspective one takes.

Perspective! Why would perspective be an important factor? How can perspective or perception of the past, present, and future impact one's health? Lets take two hypothetical scenarios. In one case, a person who lives with physical illness had a very difficult 2011. This person experiences the immediate present as no different from the past or the future and expects 2012 to be just as hard. Another person who also had a tiring 2011, believes that 2012 will be much better. Some may assume that the second scenario is the healthier of the two; however, these two scenarios are not so different from each other. Both of these people are basing their expectations of the future on their past experiences (i.e. the past was bad therefore the future will be as well or the past was bad so the future must be better). However, there is really no way to know, unless time is a prognostic factor in one's particular illness.

In both of the above scenarios, the people living with the chronic illness are depending on change in something external (e.g. the illness symptoms will be better or a new medication will help),as if they themselves are passive. Sometimes when a trauma occurs, such as being diagnosed with a chronic illness, people can feel passive or helpless, as if there is no control over one's life, and as if things just happen to them. Considering the role of perception and perspective, taking an active and internal approach influences one's focus to one of the present. Questions that arise are, "how will I cope with my uncomfortable symptoms right now?" or "I feel great, what will I do right now?" This perception allows one to accept the past as something that occurred and view the future as something that will be dealt with when it comes, and most importantly experience the now as a moment for active choices to be made. "How can I feel the best about myself right now and what decisions that I make right now will impact my health for the best in the long run? Right now I choose to eat a healthy diet. I feel great about myself for doing something nice for myself right now." There is no need to focus on your ability to maintain the healthy behavior in the future, since if you focus on maintaining the behavior in the moment it is much easier to do it and you will see that you can. Just this moment! Just for now! Say it over and over again.

2012 will bring with it many uncontrollable events; however, how one deals with those events is controllable. Deal with each struggle or even each joy as it comes. You do not have to worry about how you will cope forever, but rather stay with the how you will cope right now. Happy 2012!

Jingle Bell or Holiday Hell? Part 2: Balancing Act

Holiday cheer, Christmas songs, gingerbread cookies, eggnog, and carolers oh so nice; shopping mayhem, endless baking, non-stop Christmas songs, want to break that CD player, the tenth holiday party of the week, out of town visitors, shows and pageants...when can I get some sleep?

The holiday time is certainly a test of how well people can pace themselves and of managing an overload of expectations. Yes EXPECTATIONS...not responsibilities. During the holiday season, it is easy to confuse expectations with responsibilities. Oftentimes, people experience certain events as things that they must do lest they let down their loved ones. However, when one really thinks about it, is the holiday season really any different from the rest of the year? It is true that there can be many fun and exciting events during the holiday time, but exciting and fun can quickly turn to burdensome or overwhelming if not properly managed.

The holiday season balancing act is something that most people in the western world experience every year; however, this balancing act can be especially challenging for people who live with chronic physical illness. Although most people need to figure out how to manage the numerous holiday parties and events of the year, some people with certain illnesses need to pay even more attention to the amount of rest that they are getting, how much physical activity can be tolerated, and what level of stress is appropriate. The responsibility of balancing one's activities and health makes it very apparent to some people with chronic illness, that their illness is a reality and it can serve as a reminder of some of their limitations or life adjustments. This realization can cause some to experience various feelings such as sadness, anger, frustration, denial, or helplessness, at a time where society sets an expectation of joy and cheer. Sometimes these unpleasant feelings may result in some people with chronic illness wanting to engage in as many holiday activities as possible in an effort to will away the reality of their condition, which can follow with a worsening of one's health. On the other hand, just because a person lives with chronic physical illness does not mean that he or she is banned from participating in holiday activities all together. This is another extreme that can follow from people's loved ones' fears and concerns about the person with the illness, or from the person with the illness him or herself becoming depressed and hopeless, and believing that living with an illness means having a poor quality of life.

The key is balance...no different from folks who do not have a chronic condition. Sure, mastering the correct balance for yourself may be trickier than the balancing act of a person without a chronic illness; however it is completely possible. An important thing to keep in mind is that the holiday season is a time for fun, love, and joy. It is easy for these things to be forgotten as the societal message is one of "musts," making the distinction between expectation and responsibility difficult. Attending a million holiday events is nobody's responsibility but it may be expected by some folks in your life. Do not forget that it is ok to not meet everyone's expectations for what you can or cannot do during the holidays. What will happen if you pass on some holiday events for the benefit of yourself? Nothing other than feeling physically good, probably emotionally good, and able to partake in your actually responsibilities. So you balance: you choose what holiday events are really important to you and you take part in them, and the one's that are not on the top of your list you pass on. If anyone else is bothered by this then it is their problem to deal with as it was their expectation that led to their own disappointment, and this is something that you can communicate to them.

The holiday season can at times leave people feeling a bit helpless. Get empowered! Stand up for yourself and your needs, and communicate them when you are not feeling understood. BALANCE YOURSELF!

Happy Holidays!

Jingle Bell or Holiday Hell? Part 1: Inquiring Minds

In the spirit of the holiday season the next few posts will be a series encompassing some of the many scenarios and experiences that accompany the holidays. This series will begin with an account of what family holiday reunions with extended and at times immediate family can be like. Eggnog, Christmas trees, mistletoe, hot cocoa, and many inquiring minds.

It can be overwhelming enough having to explain to "new" people on a daily basis what your illness is, how it affects your health and daily functioning, and what treatments you are currently receiving, but imagine flocks of relatives who have not seen you in a while. Sure most of them genuinely care and are curious to know how you are really doing. On the other hand, there might also be a couple of nosy relatives or family friends who you are pretty sure thrive on knowing the most information that they can possibly gather. As such, holiday parties although joyous can become a bit exhausting. Imagine hearing, "Oh my you look really good," as if implying "given your condition I expected to see a waif with dark under eye circles and bags." Another scenario is interacting with the "google doctors" who decide it is their mission to give you advice about your condition. Such as, "I know your doctor says that your treatment is the best option, and despite multiple additional opinions that you've received, I read on the internet that the best course of treatment for your condition is ..." Or "Are you sure that's your diagnosis? It says on the internet that these symptoms are indicative of ..."

So how does one stay sane within these scenarios? It is easy to forget that most of these inquiring minds simply care and are trying to be helpful. It might be necessary to be assertive and let these inquiring minds know that their input is thoughtful but that you have it covered and that you feel confident in your doctor's actions...unless you don't, then you might want to hear some input. Do not feel trapped! Just because someone may raise the topic of your health does not mean you need to continue the conversation. You can tactfully change the subject, excuse yourself to get a drink or to go to the bathroom, or have a prearrangement with a close friend/relative, whose job it is to steer conversations away from talking about your health. All this assumes you want to avoid such discussion. If you do not mind talking about how your health has been, then this might be a dream situation for you and there is no right or wrong way to feel in this scenario.

Although the discussion of this topic was presented in a light and festive manner, it is in no way meant to belittle what an overwhelming experience this can be for some people who live with chronic physical illness. For others, issues such as managing time during the holidays, not overly exerting oneself physically, or experiencing feelings that may come up when one may not be able to partake in certain holiday activities because of illness, may be more pertinent. As such, the holiday series will continue with discussions of these additional topics. However, comments and ideas about what situations may be difficult for those living with chronic physical illness are most welcome! Happy Holidays!

Transitions

It is easy for some people to say that "everything is going to be ok" or that eventually "one will find meaning in his/her illness;" however, this can feel anything but ok for those who are not yet at that emotional place. Trying to motivate and inspire others who may be going through similar experiences can be helpful to both the one doing the motivating and to the recipients of the motivation. At the same time, it is important to take into consideration what stage of coping with one's illness a person is in. Living with chronic physical illness includes constant transitions between disparate stages of coping.

Many medical and mental health practitioners talk about the different stages people move through from the moment they receive a medical diagnosis, and as they begin to learn to adjust to and live with this diagnosis. Some believe that everyone moves through a specific sequence of stages, while others believe that this process is not so linear and that people can move through the stages in varying order. Regardless of the order, different people who live with chronic illness can be experiencing different stages of coping at different times, which depending on how this is dealt with may or may not leave some feeling misunderstood. Imagine a person who is in a period of anger. This person is angry that he or she has a chronic diagnosis and this person refuses to accept that changes in life are necessary. This person may live this period of life in a reactionary position; denying the impact of the illness and living as if nothing has changed. Another person who has been struggling with the same illness for some years tells this person, "slow down, make some adjustments, you will only make things worse for yourself." The angry person may experience the second person's advice as insulting, as a threat to one's own independence, and ultimately will feel misunderstood. It is not that the second person's advise is wrong or inconsiderate, but rather these people are in two different stages of living with their illness.

Ideally a person will transition from stages of anger, denial, hopelessness, and fear to a stages of acceptance, adjustment, and meaning. Nobody can push a person along to a more adaptive stage, but rather a person must experience the transition for him or herself. Of course this can be hard for one's loved ones who may want to help and may feel helpless in doing so. The challenge is finding a balance between acknowledging and validating the stage one is in at the moment, while staying optimistic and suggesting the possibility for change at some point in the future. Others who have gone through similar transitions because of chronic illness are in a position to empathize with people struggling to transition through these stages themselves. This empathy can go a long way. For example, "I get how frustrating it feels when your friends tell you to slow down and not go to work as much. I imagine it feels like you are useless sometimes. It makes me think about all the things you have wanted to work on but never had time to because of work...like all the books you've always wanted to read or that writing you wanted to do, or all the friends you miss calling up on the phone." Of course the statements will be tailor made for the specific person you are talking to but the overall message is that "I get it...but there is life after chronic illness...and good life is possible."

Living with chronic illness is not a static position, but rather it is a process. Living through these transitions can feel very lonely if others do not allow one to just be in whatever stage of coping that one happens to be in at a given time. People living with chronic illness do not have to feel lonely. Loved ones can stand by their side through a natural flow of transitions, holding their hands emotionally by acknowledging what their current experience is and letting them know that it is ok to feel whatever it is that they are feeling. The more people try to force a change in their loved one, the more resistance that they might meet.

The Little Things The Larger Picture: Small Mind or Big Mind?

Sometimes being diagnosed with a chronic physical illness follows with a new-found ability to experience the world through what Buddhist teaching calls "big mind." "Big mind" is the freedom to understand and feel that there is so much more beyond you, and that your life is connected to all living others around you. However, what many people tend to experience on a daily basis is "little mind." Little mind, is what happens when people are trapped within the confines of their ego, worrying about the "I" or "me me me", and it is difficult to see beyond your immediate worries.

I think it is safe to say that everyone sometimes gets stuck on the minutia of daily life, which can seem so big at one point and so meaningless at other times. What are these little things? They can be anything: work stressors, doing the laundry, buying the groceries, what you are going to wear at a party, worries about offending others with your opinions, your beliefs differing from your loved ones' beliefs, and the list goes on. People can spend so much time agonizing over these little things that they rarely think about the bigger picture in life. Sure, people value each others' existence and needs, but it is not too often that people really embrace their appreciation for fellow mankind and put their daily worries about the little things aside. However, the scale may tend to tip to the opposite side for some who live with chronic physical illness.

People who live with chronic physical illness are reminded on a periodic basis that life is precious, rather than limitless. Of course people who live with chronic illness also fall into the trap of worrying about the little things; however, often times they have a larger picture to worry about, which can typically include the feelings and needs of others, (e.g. will I feel ok enough today to not let down my coworkers, how will how I feel today affect my loved ones, will I be around enough for my family). However, not only can the care and extreme consideration extend to a person's immediate circle, but it can also extend to a desire to want to help others in general.

Why does this happen? Besides there being a visceral understand of mortality and the limits of our individual humanity, there can also be a need to feel useful. In many instances, being diagnosed with a chronic physical illness can result in feelings of frustrations with one's inability or compromised ability to do things that one used to do. Thinking of others, giving back to others in any way--emotionally or concretely allows for people to experience their continued connection with humanity and ultimately with life. Things may be different after the onset of chronic illness; however there is still life. I doubt that this often occurs consciously but rather is born out of the human natural desire to feel connected to others which in essence follows with feeling alive-- a part of.

Anyone, chronic illness or not, can choose to work towards "big mind"; however, I wonder if certain experiences, such as living with a chronic illness expedites getting to a wiser place. Again, just like everything else people have choices to make. One can receive a diagnosis and become stuck in "little mind" becoming frustrated about all the annoying changes that have to be made in one's life and thinking about "me me me"; or that same person may want to use his or her experience as a catalyst for enjoying the joy and aliveness that comes from turning the "me me me to the us us us."

This brief streaming of thoughts is an extremely simplified description of the very deep and intricate Buddhist philosophical concepts of big and little mind. However, the essence of the above is an invocation of appreciation and love for each other. In the spirit of the Thanksgiving Holiday, may we put aside daily annoyances and frustrations with things that are not exactly going "our way," and think about what we can give to each other. After all, what are we most thankful for anyway? Usually people are most thankful for their loved ones, much more than they are for their money or any other personal object. There is a reason for that and sometimes it takes a diagnosis for people to maintain that Thanksgiving feeling on a daily basis. Let us try!

Active Coping or Destructive Manic Defense?

When living with chronic physical illness it is sometimes very helpful to distract the mind from focusing on the illness or the pain, and to refocus thoughts on pleasant activities or tasks. This is a form of active coping and it can be extremely successful in alleviating one's pain associated with the illness. Focusing on pain that accompanies one's illness can actually intensify the pain and can contribute to feelings of helplessness and depression. On the other hand, attempting to maintain as normal or as satisfying a life as possible despite one's illness can minimize the intensity of physical and emotional suffering.

It is generally understood--active coping is a good thing! However, like many other situations or constructs in life, too much of something or too extreme of a position can become harmful and can distort the benefits originally intended. With respects to active coping at an excessive pace, one might be engaging in what psychodynamic literature identifies as the manic defense. Broadly speaking, the manic defense is an attempt to deny feelings of sadness or depression by adopting an overly active and/or triumphant position. It is similar to denial but is manifested not only through words but through actions as well. For example, a person may be experiencing a situation that calls for sadness or loss, and which others around this person can identify as a difficult situation. Loved ones may inquire as to how the person is dealing with the particular experience and that person may respond by saying "everything is fine" and then proceed to invite others along on a series of back to back activities that leave no time for rest and reflection.

Some may wonder, so what's the big deal? Defenses are in place to help people defend against anxiety and are basically ways of coping. However, again it is the extreme use of the defenses that could be problematic. Imagine, if one continuously engages in a manic defense by constantly putting his or her body through activities and tasks; when does that person rest? Eventually that person will rest and it will hurt and most likely more than if the person paced him or herself a little more and took adequate breaks between activities. So there is the physical consequences, but there is also the emotional consequence. Every time one pauses and allows some space between activities, it is a reminder of the fact that the body needs rest, that nobody has a healthy body forever, and that as people we have limitations--we are not immortal superpeople. This type of reflection is difficult, but over time this paced reflection and processing allows for one to come to terms with his or her condition. If the opposite occurs and there is no gradual reflection time, the sadness or feelings of loss associated with the illness are denied. Eventually when the person does rest, depression may hit the person like a ton of bricks. Reality can not be escaped forever.

Solution=balance + pace. Living with chronic physical illness is undeniably sad at times and can involve a sense of loss. Similarly there can be a lot of physical pain and/or discomfort. Paced active coping can certainly help one live a fulfilled and active life, and can ease physical pain and discomfort. However, there needs to be a balance between activity and rest and reflection. With rest and reflection comes wisdom about what experiences and events really matter. There is a difference between fearing that life is short and therefore wanting to live it to the fullest, versus fearing death and wasting life engaging in as many things as you can, so you don't "miss out" when in actuality you may very well be "missing out" on things that really matter to you. Don't let life pass you by. The illness, the pain, and the discomfort although unwanted is part of your life. It is evidence that you breathe, have a heart beat, and a body that is mortal. Embrace it in order to accept and let it go when you want to do things that have meaning to you. LIVE!

Matters of the Heart

For many years it was largely assumed that a Type A personality, anger or hostility was related to onset of heart disease. However, empirical research has found that the relationship between heart disease and Type A personality is quite complicated and that the impact of hostility on the development of heart disease is at best weak (Marks, Murray, Evans, Willig, Woodall, & Sykes, 2006). Generally, there is much less heard about Type A behaviors, hostility or anger in those who have already survived and live with heart disease. This is unfortunate as there are multiple factors that can contribute to the emergence of feelings of hostility or anger when living with heart disease. For example, a person who has just undergone cardiac surgery may be experiencing excruciating pain. This person's ribs may have had to be broken in order for the surgery to be performed, arteries from other parts of this person's body may have been moved in order to replace damaged arteries. It is extremely difficult to imagine this person not being at the very least a bit angry about what his or her body has had to go through. This is only one scenario. Imagine another person, who happens to have a Type A personality but whose activities are significantly limited because of a heart condition. This person might be furious that running a marathon, doing all the house chores, and working long hours is no longer an option...talk about lifestyle changes! There are numerous examples and I am sure others can include additional ones but something that is certainly painful and that cannot be avoided is the meaning associated with damage to one's heart.

Many ancient traditions believed that the heart is the seat of the soul, and held the heart in higher esteem than the brain or mind, which most modern day westerners do not do. However, even modern day westerners think of the heart when they think of life. It is the organ that pumps vital blood throughout our body that keeps the body and the brain living. Similar to older traditions, most modern communities acknowledge the heart as the origin of love. Even little children draw pictures of hearts when they think of love. Damage to any vital organ of our bodies is likely to create anger, pain, frustration, or a need to exert control. However, the heart is the only organ that has all of these transcultural and transgenerational meanings attached to it. Literally one's heart is "broken" or "hurt" or "damaged," and it may feel completely out of one's control. Yes maybe one could have smoked less, ate healthier, or exercised more, but then there are just some who have heart disease running in their family and could not avoid it despite being pinnacles of health. Regardless of the contributing factors, nobody asked for a broken heart.

Similar to an emotionally "broken heart," sometimes people who live with heart disease may feel like nobody understands their pain. They may want to be "left alone" and at times can become depressed. They may feel a need to try to micromanage or control whatever they can on their own without help from others, much like someone who has been let down by another person--except this time their own body has let them down and hurt their hearts. It may become easy to want to protect one's own heart from any more pain, to close it up, which may even manifest physically by slouching and sinking one's heart into the chest rather than standing up straight and showing one's heart to the world.

This sounds sad, but it does not have to be. Think about people who have had their hearts broken by others, became depressed and sad, and even angry. Many of these people a few years later or maybe even sooner are the happiest they have ever been and in loving relationships, perhaps with others but most importantly with themselves. Yes, there are other people who have had their hearts broken and have never seemed able to recover but that is a choice guided by fear...fear of standing up straight again and showing one's heart to the world; heart emotionally but also heart physically.

Emotions and the body are not so disconnected as it is easy to sometimes believe. There are reasons why meanings of love and life have been attributed to the heart. Sometimes a way to get to an emotional place that you'd like to be is through the physical. As discussed above the physical can certainly negatively impact one's emotional state but it can ALSO do the opposite. Ok, so your body has let you down, your heart hurts and is in pain...what are you going to do about it? Will you live in fear of feeling pain again, hiding your heart deep within the cavity of your chest, or will you stand up tall and say I love you to life...even if sometimes it hurts. Maybe you can try to make some physical changes (CHECK WITH YOUR DOCTOR FIRST)such as engaging in certain yoga poses that focus on opening up the chest area. For something less physically rigorous, try some reiki or meditation on the heart. If approved by your doctor even try or some aerobic activity, such as running, dancing, or swimming. Physical changes can also include behaviors like singing, which involves breathing through the belly and chest and brings fresh life giving oxygen to the heart. One can also read poetry that invokes loving emotions. There are many options.

I do not think anyone would suggest that it is not ok to feel angry, sad, or at times even want to isolate yourself. These emotions are ok as long as they do not take over. Anything extreme is usually never a good thing but all in moderation is not so bad. Surviving and living with heart disease can be a traumatizing and terrifying experience, and one has a right to feel whatever he or she feels about it. The question remaining though is, will you be that person who never gets over one's lost love or will you be the person who after experiencing a lost love eventually finds happiness like never before? Remember your heart may have been broken, but your heart--YOU are still alive.

Marks,D.F.,Murray,M.,Evans,B.,Willig,C.,Woodall,C.,& Sykes, C.M. (2006). Health psychology: Theory, research & practice (2nd ed). New York: Sage.

Everyone Gets Tired...But Not Like This

Lupus...some people know what it is, most people don't. People may listen and probably understand when they hear the words, "chronic autoimmune disease" or "there is no cure." However, do people really comprehend what it is like to live with lupus? Part of the struggle of living with lupus is making what the experience of living with lupus is clear to others, such as partners, family, and employers. Perhaps others have little difficulty grasping the seriousness of organ involvement, or the tangibility of skin damage; however what do others think about two of the most common lupus symptoms: fatigue and joint pain?

Most people living with lupus are diagnosed during childbearing years...in their prime where they want to be active and have jobs. Typically people living with lupus do not look any different from people who do not have lupus. It is hard to tell that there is an illness present; however, people with lupus may feel chronically exhausted, fatigued, and in a lot of pain. Sometimes the fatigue is so great that it is a tremendous effort to walk from one's couch to the bathroom or it is difficult to think clearly. People without lupus have no way to know how a person living with lupus feels, unless it is communicated to them--this can be frustrating!

With many other chronic illnesses, it is obvious that the person is suffering, but with lupus this is not always the case. Imagine a young, seemingly healthy 30 something year old woman who has a full time job that she really enjoys. This woman also lives with lupus. She has been feeling ok for awhile but for the last two weeks her joints have been hurting greatly and she feels exhausted. She wants to take a few days off and rest but is afraid of what her boss might think. Thoughts of what her boss could be thinking run through her mind such as, "she doesn't look sick" or "she wants to go home because she is tired...so what? Everyone gets tired." This woman who suffers from this extreme fatigue may feel that her symptoms are illegitimate or may feel ashamed to ask for time off because of them. She may or may not speak to her boss. She may choose not to speak to her boss and continue to suffer, contributing to feeling even more exhausted at the end of the day. On the other hand, she may decide to speak to her boss and feel ashamed or frustrated at her boss' lack of understanding and dismissal of her pain, which may deter her from speaking up again. The outcomes of these options seem quite grim; however there is another scenario. In an act of self-care, this woman can speak to her employer and if her employer does not understand, she can provide her employer with some educational literature, and if the employer still does not understand, she can remind the employer that according to the Americans with Disabilities Act, employers are required to make reasonable accommodations to permit people with disabilities to be employed. Hopefully this woman and the employer can then work something out.

There are many practical solutions to scenarios such as the one described above. However, the more significant issue is how this young lady must feel having to justify her symptoms...her experience...the fatigue that is very real to her but which she may believe that she has to prove. People may think, "everyone gets tired" but most people have no idea just how debilitating lupus fatigue can be. It can be a challenge for those living with lupus to shed any feelings of embarrassment or shame regarding their fatigue or pain, and to boldly request their needs. All people want to be understood by others, lupus or no lupus. People living with lupus are constantly learning the they need to speak up to have their experiences of exhaustion and pain fully understood. It is not always easy, especially when others do not seem to understand and some may want to give up. Hopefully someone will remind that lupus fatigue is a legitimate experience and that having special needs or requests is justified! I hope I just reminded you to take care of yourself as best as you can.

Most people know very little about lupus and autoimmune diseases in general. The millions of people living with these illnesses need advocates. Get involved! Donate to research to help find a cure, or help spread the word and educate the general public.

Double Illness Double Trouble

Living with a chronic physical illness can involve frequent periods of muscle pain, joint pain, nausea, dizziness, fatigue, confusion, memory loss, weakness, among other symptoms. Some people who live with chronic illness experience one or more of these symptoms on a daily basis. It may be difficult to fathom how any person can cope with such a situation; however, human resiliency can be most surprising! Thinking of living with a chronic physical illness can seem so daunting that it makes little sense to think about what people living with chronic physical illness go through when they get sick with everyday illnesses, such as the common cold, flu, bronchitis, or sinus infection. However, the experience of double illness can mean double trouble for those living with chronic illness, in a variety of ways.

People vary in terms of how long it takes them to adjust to the particular chronic illness that they live with. Some symptoms can seem unbearable for months and years, but at some point many people learn to integrate their symptoms into their daily life. For example, pain may become part of one's existence...it becomes familiar. The predictability of the symptom may on some level even become comforting as it can be something that is understood, identified, and labeled. "Oh there goes my hair falling again. Must be X pill causing that like last time," Or "Darn my skin has itchy blots. I should have stayed out of that sun." This predictability does not in any way minimize the trauma and unfairness of having to live with these symptoms. Nobody should have to experience chronic illness. The intention is to illustrate that because living with chronic physical illness comes with so much uncertainty and unpredictability, a great need for understanding and predictability is usually present. Now imagine that a person who lives with a chronic illness wakes up one day and feels some random sensation in his or her chest. This can be extremely frightening. It is not one of the everyday, identified, and labeled symptoms that have become integrated into the person's daily life.

Until an explanation is provided, the person may become frightened that something is seriously wrong. Even after the reason for the new symptom is identified, for example the strange sensation in the chest being the result of bronchitis, which can easily be treated, the person may travel through an ocean of emotions. The person may start having generalized depressive thoughts such as, "everything bad always happens to me. I always get sick." The person may also blame and become extremely critical of him or herself, believing that an unrealistic kind of extra care must be taken since he or she already has an illness. The person's chronic illness symptoms, depending on the illness, may also become intensified, thrusting the person out of their integrated and somewhat controlled state of being, forcing him or her to deal with the feelings of uncertainty that comes with living with chronic physical illness.

Think about what it feels like to have the flu and to be bed-ridden for days or to have to get through a day with a pounding sinus headache...while NOT living with a chronic illness. Now imagine having to live with a chronic illness. Its easy to question, "why would anyone living with a chronic illness care about catching a cold when they have so much more to deal with?" Well that's just it--there is already so much to deal with. Being diagnosed with a chronic illness is traumatic in it of itself and every time another unpredictable sign of sickness reappears a possibility for retraumatization is presented in a variety ways,as described above. The process of accepting one's illness and symptoms is not an easy one. Nobody wants to relive that process every time they get sick.

Not Lucky to Have and Illness but Lucky to Have a Diagnosis...What?!?

Living with a chronic physical illness is living with uncertainty (when will the symptoms strike, will I remain stable, how will this impact my life goals?). One thing that is certain is that a diagnosis has been named that can change one's life forever. What if the diagnosis was also uncertain? What does one grasp on to?

Not all chronic illnesses are easy to diagnose. Many people suffer with debilitating symptoms for years before doctors are able to provide them with any answers. For example, people may be struggling with an autoimmune disease for six, seven, even ten years without anyone being able to identify the disease or provide appropriate treatment for it. It is easy to imagine how devastating it is to receive a diagnosis of any chronic illness, but harder to think about how lucky one is to pinpoint what the problem is early on.

One big red butterfly rash on the face and immediately one is clued into Lupus as the culprit. A big rash--its not exactly the most pleasant thing, but now it is known and medication and treatment can begin in hopes of preventing additional tissue damage. What if that rash never came? Maybe a diagnosis could be made with history, blood work, clinical symptoms...maybe not. Besides the damage that could be occurring in the body, imagine the uncertainty of not knowing what is happening in one's own body. "Why is my body doing these things? Why am I in pain? Why am I so tired? Why did my legs stop working? What will happen to me? Am I going to die?" The answer is "nobody knows." How terrifying is that?

Living with a chronic physical illness is a tremendous challenge regardless of whether or not there is a diagnosis. It is not fair, it is at times uncontrollable, and it is suffering. It takes enormous strength to adapt and to continue to live well. Staying positive can be a challenge. So it might sound insensitive or odd to say that one is lucky to have a diagnosis. One is NOT lucky to have an illness but to be able to name what that illness is opens the door for answers, for treatment, for health, and for understanding. To be ill and to not know why or what it is is even more frightening.

It is easy for people..all people, chronic illness or not, ...to get stuck in their own heads, their own worlds, their own suffering and to feel like there is nothing else going on in the world. This can become isolating and counterproductive. Never down play your own journey, your own strife, or your own pain. Share your experience and do not allow yourself to be alone. Hear the suffering of others. Let them share and feel that they are not alone either. Be careful not to forget the things that you are lucky to have, that could have been worse, and that are worse for others.

The Irony...Healthier Living with a Chronic Illness

What does being healthy mean? Can one live with a chronic physical illness and be healthy despite the illness? Is one healthy during periods of remission? Does living with a chronic physical illness mean that one cannot be healthy?

The question of health is a complicated one and is a question that many people who live with chronic physical illness face on a regular basis. At times, people living with chronic physical illness may want to forget that they have health related issues to deal with that other folks in their lives do not. In fact some people with chronic illness do forget about their health concerns until something happens to remind them. There could be days or weeks, months or years of remission when a person with chronic physical illness experiences him or her self as illness-free and completely healthy. But what happens when people who are living with an illness experience a day of suffering, when symptoms are rampant? A day like this can happen on a regular work day, in a moment riddled with responsibilities, and can be a forceful reminder that the illness is there. Days like this can really make some people confront what is truly important in their lives. It can make one question, "life is short so, do I have to have this particular job" or "if I am suffering, shouldn't I really enjoy my responsibilities rather than suffer through something I don't even care about?" Many questions may come up about how one is living his or her life. Some people may even think about the future generation. For example, a woman who wants to be a mother, living with an illness that makes it likely that pregnancy will be a high risk, may question how well she is preparing her body for a baby. Her future desire for wanting to be a mother may be so much more important to her than her immediate responsibilities, that she may choose to rearrange her life in the present in hopes of making the future outcome that she longs for more likely.

Some may question what all these examples have to do with health. For thousands of years humans have defined health in a myriad of ways. The ancient Greeks believed that health was achieved when there was a balance of four bodily fluids. There are certain African tribes that currently believe that health is a balance between the physical and spiritual, including making peace with spirits of dead ancestors. It is only the recent Western definition of health, which limits the understanding of health as being equivalent to the absence of illness. According to this modern and medicalized understanding of health, those living with a chronic physical illness are technically not 100% healthy. However, thinking about health in a broader light makes it possible to see that actually being diagnosed with a chronic physical illness may serve as a catalyst for a certain level of health that would never otherwise have been achieved. The presence of physical suffering is a reminder that our bodies cannot sustain life forever, that we have a limited amount of time on this earth, and this can serve as the strongest motivator for choosing to live the rest of your life making the right decisions--the healthiest decisions. Some may realize that they neglected their innate passions and talents to work a job that pays the bills but brings no satisfaction. Others may realize that the stress of professional success may put such a strain on their bodies that pregnancy will be extremely difficult. There could be people who realized that they have spent too much energy caring about what other people think about their lives rather than taking the time to decide for themselves what is important to them for their lives. Yes having a non-ill physical body means being healthy. However, health is also recognizing what you love, what will make you happy, and how you really want to spend the short time that you have on this planet. Health is being able to walk away from something that you do not particularly care about so that you can move towards what really matters to you. Health is about not caring about what others will think and having faith that those who truly matter will support you in your decisions. Health is being able to come to peace with the limitations that your illness has imposed onto to your life and using these limitations to really hone in on what matters most. If you can only do a few out of the many things that you had intended for, figure out which you really want to do...and go for it! That is health! Steve Jobs had pancreatic cancer and a liver transplant, and died too young; however, he was probably one of the healthiest men of the century.

"Almost everything--all external expectations, all pride, all fear of embarrassment or failure--these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart." (Steve Jobs)

Emotional? Physical Feelings? Both? Confused!

"I am so angry! This person just irritates me so much. I don't know why! He just does."

"I feel so sad today. I think I'm unhappy with my job or maybe I am unhappy with myself...I am not really sure."

"I just feel so depressed and I don't know why."

It is not uncommon for people who live with chronic physical illness to at times experience unwanted emotions (e.g. anger, sadness, depression) and to be unsure about where these feelings came from. Sometimes the person is able to identify the cause of their emotion and other times the person may remain very confused about their experience. Oftentimes, one thing that people who live with chronic physical illness are not uncertain about is their physical pain or discomfort. For example, one can identify pain in the muscles, or a headache, or complete exhaustion. So how are these two things related? Emotional pain and physical pain...are they so seperate after all?

It takes up a lot of emotional energy when a person who lives with a chronic physical illness suffers or hurts physically. The pain may be felt in a physical body part such as a chest or a kidney but that physical body part is also a part of the entire human. There will certainly be some emotional reaction to the symptom even if the person has experienced the same symptoms thousands of times. A person can think to him or her self with ease, "I know what I am feeling right now. It is my ____ acting up." However, intellectual understanding does not necessarily negate emotional feeling. Even if a person has experienced this symptom numerous times it may make him or her furious that he or she needs to deal with this regularly or maybe very sad about the limitations it imposes on his or her life. It is easy to ignore these feelings in the service of a "I am used to this, life goes on" attitude, but these feelings will not just disappear; they will express themselves in one way or another. For example, one's anger about having to deal with the illness symptoms may be displaced onto a coworker who suddenly irritates the person to no degree for absolutely no reason, or a piece of constructive criticism at work causes one to break down in tears, masking the underlying sadness about the chronic illness. Displacement of the feelings of one's suffering onto something else in the person's life can leave the person feeling very confused and disillusioned.

It is sometimes not easy for a person to really admit to him or her self that the physical symptoms of his or her illness are causing emotional reactions. People may think "this darn illness is hurting my body and now its causing me emotional pain too!" Some people may feel that admitting to the emotional effects of the physical illness is letting the illness "get the best of them." However, in a way the opposite is true. If feelings are not acknowledged and directly and appropriately expressed, they will find a way to manifest...usually in a displaced way. It may be difficult but it is worth the struggle to get to the point where one is able to say, "I am angry because I hurt so much today" or "I am really sad that I can't run like I used to" or "I am depressed that I cannot be there for my kids in the way that I really want to be." Sometimes one may need to seek professional help, as this process of acknowledging how the physical and the emotional dance together as one can be very difficult.

People can ignore the holistic nature of being human...the interconnection of physical and emotional; however, pretending that a duality between body and mind exist does not in fact create such a duality. The feelings will still be there and if expressed inappropriately and in a displaced manner may cause more confusion and problems for people than would have resulted from the acknowledgment of the feelings stemming from the physical illness. Yes it is not always an easy task as these feelings may oftentimes not even be conscious as they can be so painful. It is important to seek professional help if you see that your emotions have been causing problems in your life, your social relationships, or your job since you have been diagnosed with your illness. Maybe you do not have to remain confused.